The National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions (GenTAC) was initiated in 2006 by the National Heart, Lung, and Blood Institute (NHLBI) and the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). The goal of GenTAC is to establish a registry of patients with genetic conditions that may be related to thoracic aortic aneurysms and to collect medical data and biologic samples. The samples and data will be made available to qualified investigators to enable research to determine best medical practices and to advance the clinical management of genetic thoracic aortic aneurysms, and other cardiovascular complications. Over 3600 subjects have been enrolled into the registry.

Eligible subjects must be seen in person at one of the participating locations. Contact the study coordinator at the location nearest you for more information about participation. This study does not provide genetic testing.

The cohort consists of patients with conditions related to genetically-induced thoracic aortic aneurysms.

Criteria

Eligible subjects must have one of the conditions listed below and be enrolled in-person at one of the participating clinical centers.Contact the study coordinator at the location nearest you for more information about participation.

Marfan syndrome

Turner syndrome

Ehlers-Danlos syndrome

Loeys-Dietz syndrome

FBN1, TGFBR1, TGFBR2, ACTA2 or MYH11 genetic mutation

Bicuspid aortic valve without known family history

Bicuspid aortic valve with family history

Bicuspid aortic valve with coarctation

Familial Thoracic Aortic Aneurysm and DissectionsYes

Shprintzen-Goldberg syndrome

Other aneurysms and dissections of the thoracic aorta not due to trauma, <50yo

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study.
To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below.
For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT01322165